Not much help or support for Diverticular Disease

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I was diagnosed with Diverticular Disease in Dec 2013 after 4 days in hospital and the Drs having no clue what was wrong. After having a CT scan they found the problem. I was 30yrs old and if Im honest I was shocked. I felt this was an 'elderly' thing. 

Since my diagnosis I have had 4 bouts of diverticulitis that I have dealt with myself. I take paracetamol and go on a liquid only diet for 4 days and until the symptoms go away. I had a sigmoid colonoscopy in April to see how much of my colon has these diverticula and the Dr said it was of medium severity at this point. 

The only way I can describe the pain of a flare up is like having contractions, Ive had 3 children and would take childbirth over this any day. 

The point Im trying to make is that I have found there is little or no support for people with this digestive disease. I read conflicting reports on what I should be eating to help live with this and its starting to take over my life. I run a business and have 3 children so I need to be able to manage this.

Natalie x

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  • Posted

    O.K Natalie. a""pain picture"" we sufferers, don't need ,,been there etc. You are probably not aware that what you put in your mouth affects flare ups May I suggest that you come over to the Divi Diners forum wher you will meet lots of HAPPY

    sufferers because we collectively add on a daily basis a GOOD food guide, and a KEEP CLEAR one .Yes there are a few wriklys  here but a sense of humour

    is absulutely necessary We support each other aith lots of infomation regarding

    this evil little toe rag and I for one thoroughly enjoy this gang of refuse collectors.

    See you soon Jaccheesygrin  

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  • Posted

    Iv'e just read my comment to you, and apologise fer the incorrect, and back to front

    words, but the gremlin under my key board CANNOT spell

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  • Posted

    I am interested in the divi diners area.   How do you enter it as I have problems with diverticuliand agree it is what you are eating that causes pain, etc.
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  • Posted

    Young indeed! .... :-(

    I was mid-40s before a half-lifetimne of 'slow throughput' led to DD for me, I imagine. When DD became a management project, I was already legally blind and so the time menagement aspect (of DD) was not a significant overhead. But in your situation - with huge quality of life implications for you and your family - I would seriously be banging on doors for a surgical intervention. Quite why peoples gut goes soggy so much earlier in life these days (or so it seems to me) is the project the medics should be looking into, imho. I had a long spell on a medication that was designed to relax/soften 'smooth muscle' - a short time before the DD started to bite. This was for repeat UTI occurences. I don't know how specific that med was in targeting the urethra - rather than the gut walls - or even cardiovascular pipework? Time will tell.

    But it does seem that if surgery were likely to remove a limited bunch of diverticula then 'at your time of life' (!) it should be an option open to you. Otherwise it looks like you are in for a long innings. :-(

    Good Luck,

    CC.

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  • Posted

    Hi there and welcome to the 'gang'.      Lots of us about suffering from time to time.  i am nearly 70 and this is not going to ruin my life I have made up my mind.     Try some Fybogel.   Get the doctor to prescribe it for you as it is pricey.    They usually give you a lot of them at a time so you can easily take one in the morning and one at night.   Having suffered from this for years now this Fybogel has transformed my life.     I do avoid strawberrys though as I love strawberrys for some reason they dont do me any good whatsoever.

    Good luck.

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  • Posted

    A couple of second thoughts:-

    Fybogel has been mentioned. It's the latest in a history of bulking agents (possibly with some small, more active component) that is aimed at constipation it seems (from the nhs site http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?medicine=Fybogel ) The rider in the application speil is that it "may" help sufferers of DD. I wonder if with later onset sufferers if inded they have a composite of DD and either intractible colon or so called IBS? As an engineer (and I've said before!...) keeping the gut motile keeping pockets clear of grot are fairly 'at odds' with each other, aren't they? : You want bulking stuff to grip onto, but that same stuff bungs-up the pockets, surely! Maybe that's why the NHS article says, "may" help in DD. I think this conflict of mechanical issues with the gut is the reason why some people get on better with differing strategies - and the reason why there appears to be no unique, optimal management guidance coming from the establishment? Hence your own topic header is the 'bottom line' too!

    All the 'help' appears anecdotal and it seems there is no way guaranteed to keep you on-your-feet, sevem-days-a-week. Which is much more stressful at your time of life. I hope your GP will be more helpful and not just treat you in the generic (nay geriatric) way. ....."Incoming!....." :-)

    CC.

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  • Posted

    I joined this site to give back my experience because I indeed know the pain, the frustration and the concern one has with how to solve Diverticulitis without the final result of surgery...which Dr.'s told me still might not stop future relapses. I went 6 years with having 3-4 relapes (infections) a year.  I was given Ciprofloxacin and Metronidazole (flagl).to treat infection. Bottom line, Dr. wanted strongly to operate and cut out area of intestine. I heard from family Dr. to try Meta-mucil here in the States, which we can get at any grocery store or pharmacy over the counter, which I believe sounds just like the Fybogel mentioned earlier. I am very happy to report, it's been about 4 years now since that last relapse and I eat anything I want again(nuts, seeds raw veggies especially raw carrots which always seemed to be a part of my relapse?) and feel great. I take a heaping tablespoon with warm water every morning. I also take 500 mg Lysine a couple times a week (it's an amino acid, which I started using whenever I got a mouth or tongue ulcer...which I would get occassionally and it speeds up healing). The lysine was my idea and Dr says that's great. I was in my late 40's when I first got diagnosed. Try it for 6 months and if you haven't had a flare up keep going and I hope you are writing to someone just like me in a year or two with the same results! All the best.
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    • Posted

      i found your post by typing lysein and DD

      ive been researching for about 3 days now

      you actually stopped my researched answer, 

      and i want to thank you ,i hope it suits me and others 

      that i believe in..going with l-lysine & mm ..currently trying

      L-glutamine which i have researched for about a week also..

      again thanks tom 

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  • Posted

    New sufferer but find fybogel just binds me up when I feel I need to keep the gut clear. Also tried laxido prescribed by gp without much success. 

    Haven't had Flare ups only continuous diarrhoea over 4 months so I need to find a way to manage it too.good luck

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    • Posted

      Hi Im Sue, Ive noticed whole wheat was my trigger and Iv been clear for 6 months till now.Ate sausages and white bread 3 days running my neighbor is a gp and said staight away to come off wheat  try it, Its hard but may help
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  • Posted

    Hi all.

    I have been suffering now for very many years with gut issues and in Jan 2013 I had a flexi Sigmoidoscopy! Which I don’t mind saying was the worst experience I have ever had.

    Nothing showed up and was diagnosed with IBS and given the normal Hyoscine butylbromide and more recently have added Mebeverine to that also.

    About 3 months ago I started to get a pain in my left side, which subsides with a BM, however it is normally always there.

    I have visited many doctors and have many different reasons for this pain,

    flare up of IBS

    muscle pain

    flare up of IBS

    diverticulitis (because I was in pain when he jumped on my gut)

    and more recently Diverticular

     

    It is normal for me to have BM which switch from solid to lose but over the last 3 weeks or so I have had a few which have been darker than normal, and that with the pain in my left side made me worry so I went to the on call doc who said it’s this Diverticular

    Said not much more then what it is, a budge like a sausage? Lol

    Have had blood test which have always come back clear !

     

    help, is there any risk of having this, given no pain relief, no guide nothing.

     

    Hope someone can put my mind at rest.

     

    I have a lot of stress at the moment, wife is disabled and farther has JUST had a liver transplant,

     

    Any advice I will be grateful for

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    • Posted

      Hi midbugslife

      I was just told today that i have Diverticulosis and i have been suffering with a lot of pain for over 4 years due to a problem after a hernia op but then about 6 months ago my gp put me on ( Durogesic DTrans transdermal patch fentanyl ) patches and i am now on 50mcg / hr patches and it is a great relief because i ended up taking 4000mg per day of Tramadol and Pregablin per day which was making me a bit of a zombie. I do still take 600mg of the Pregablin as well as the patches and as you get used you will increase your level of patch but if you are in a lot of pain as i was its well worth asking your gp about them you will still feel it but its in the background most of the time and i can now sleep most nights as before i would go days until i would just drop. So i hope this is of some help because intense pain is a horrible thing

      Well good luck and i hope it works for you

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  • Posted

    You are not alone and I think a lot of us younger are misdiagnosed initially too. There is different thoughts on the aetiology of diverticulitis such as low fibre diet, stress but truth is no one knows. Some one however suggested it to be an autoimmune disorder which I totally buy. Recent research , several clinical trials has shown antibiotics to make no improvement on outcome or recovery period in uncomplicated diverticulitis. So why do we give antibiotics? To combat bacterial infection. If this inflammation is not helped by antibiotics then there must be another cause. Such as autoimmune or viral. Another example of autoimmune be psoriasis or arthetitis which gets a lot worse when patients are stressed, worn out, run down. I suggest you keep a diary so you can trace what you eaten ,your mood and general health. You may be offered surgery to take out affected piece of intestine. If you keep a diary you might be able to find a trigger. But if you run your own business, have three little ones I'm sure stress would be a part of your life. I'm in same boat. 3 kids, sole provider. Its so stressful especially now after this started. I'm at my wits end as I now been sick for 9 weeks. Its disgusting. I was misdiagnosed with appendicitis initially and had to go gp 5 times, a and e 5 times before anyone started to think it might not be post op pain. I really had to fight them. Maybe because I am only 38?
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